Wednesday, December 31, 2008

Each day I am improving a little more - still have a little bit of a cough and a constantly runny nose - but still very manageable.

This afternoon, Mommy, Lucille and I headed to Roseville to see my GI, Dr Davies. She was running a little behind so we had a good 1/2 hour in the waiting room. I made good use of my time by waving at everyone coming and going and blowing kisses to the office staff. One woman was sitting close by with her bottle of water. First I signed "wash hands" to her but she didn't seem to know what I was saying. Then I signed "water please". Mommy explained to her that I was wanting a drink of water because I saw her bottle and the woman thought it was very cute. If Mommy had let me work on her a little longer I am sure she would have shared with me - cold or not. There was also a baby a little younger then me that I kept signing "signing" to but she didn't understand me either. Mommy interprets for me though so people know what I am trying to say.

I weighed in today - naked - at 17 lbs. 14 ozs. Dr Davies thought I looked great and I am gaining weight at a pretty good rate so next time around, we may actually have to reduce my calories from 30 kcal to 27 kcal. Because I have surgery next week though, for now we are leaving it the same. After I stabilize from my surgery, Dr Davies has given my parents the go ahead to start trying to get rid of my night feedings. They are going to have me go from 4 bolus feeds a day to 5 and then increase each feeding slowly until all of my feeds are during the day. Once that is working well the next step will be to have me take as much milk by mouth as I tolerate and then give the remaining via the g tube. Hopefully, over time, I can take all my milk by mouth but it will probably take some time to get there.

Tuesday, December 30, 2008

Now that we are back to Sacramento we are back to our "normal" routine of doctor's visits. This morning, though, Mommy met with a person from Medi-cal from my annual review. There wasn't much to update as not much has changed from a year ago - I still have a trach and a g tube so the hours I qualify for nursing will remain the same. Once I do get my trach out though, I will still qualify for some nursing hours just with the g tube so that was good news for my parents.

In the afternoon, Lucille, Mommy and I went to the UC Davis MIND Institute to meet with a geneticist, Dr Herman. She just wanted to follow up since genetics hadn't seen me for a year. There isn't much new that she could tell Mommy - there still aren't any tests to determine how I got Nager and there aren't any new clinical trials being conducted that Mommy didn't already know about. I did get a weight check and with clothes I was up to 18 lbs 9 ozs. Tomorrow I have an appointment with the GI so they will get an updated weight without clothes to see how much I have grown since the last visit. Mommy is just relieved to see that I have gained a little something through all the formula trials and tribulations of the last few months. While we were meeting with genetics, I found a little kid's chair and figured out how to climb up into it - just like climbing stairs! Now that I am walking, I am all over the office during appointments, Mommy is having a harder time than ever keeping me entertained. The geneticist who saw me while I was in the NICU and met with my parents initially, was in the office so she came in to see me with Dr Herman. She was happy to see I was doing so well and doesn't often get the chance to see her "babies" all grown up. I showed her some of my signs and my new thumb. Mommy is going to follow up with endocrinology about my growth and with prenatal genetics if she and Daddy plan on having other babies to get a high resolution ultrasound early on to look for Nager.

I have been slowly getting over my cold. My parents have continued with my twice daily breathing treatments and they think that has been the key to the cold not being as bad as the last one. During the breathing treatments, though, Mommy has to find some way to keep me occupied. So now she gives me a canister, a spoon and a bunch of Splenda packets and I am happy for the time it takes to finish the treatment. Since I have had a trach mist from the beginning, the nebulizer treatments don't bother me too much - I am used to stuff blowing in my trach!

Sunday, December 28, 2008

Despite such a rough night, I had a pretty good day today. In the morning, Mommy gave me another breathing treatment and then went to sleep for a few hours while Daddy kept an eye on me. He was busy while Mommy was asleep getting caught up on the laundry. When Mommy woke up, Daddy went to wash the car and Mommy worked on more of the laundry. I just kept right on playing - I didn't even cough very often. While I was down for my afternoon nap, Mommy ran to get groceries and then she put together some of the new toys I got for Christmas. I finally got to play with my kitchen!

I was pretty grumpy by bed time and despite another breathing treatment in the evening, my oxygen saturations are still pretty low. My heart rate is looking better though so my parents are hoping I have a restful night tonight and I continue to improve.

There are no pictures for today - it is a day probably best forgotten if you ask my parents. Not only was it time to leave Salt Lake and head home but I was also awfully sick which made the trip that much worse. As soon as I woke up I got a breathing treatment and then everything got packed up. The car was full and there wasn't much room to move around but everything did fit. Grandma and Papa Smith got up early to see us off.

The roads were really bad until after Tooele and then they cleared up. I would nap for a short period of time and then wake up crying. My breathing was pretty labored at times which scared both my parents but they knew it would be best to get me home as quickly as possible. We stopped a few times for gas and my parents ate a quick lunch in the car. For diaper changes, my parents would put me down one of the new plastic covered pillows Karen got for Daddy and they did well as a make shift changing table - pretty comfy actually. We ran into a little snow about half way into the trip but when it came time to get up over Donner's - the roads were clear, the sun was peeking from behind some clouds and traffic was moving pretty good. I slept the two and a half hours it took to get up and down Donner's and woke up about 1/2 hour from home. My parents were so relieved to finally get me there. Thanks to everyone for their thoughts and prayers.

While Mommy got all my machines set back up and I watched a video, Daddy went to pick up my furry brothers and some dinner. I played awhile in the evening and then it was time for bed. Since my parents don't have a nurse tonight, Mommy stayed up with me. My oxygen saturations and heart rate were all over the place and the alarms went off all night. I also woke up a few times - but after sitting up and seeing Mommy was there with me - I went back to sleep after a few minutes of playing. It was a long night!

I finally got to put my new snow outfit to use! With all the snow yesterday and us hitting the road tomorrow it was my final opportunity to try it out. Mommy sat me in the snow and I was pretty unimpressed. Daddy thought about lying me down to make a snow angel but the snow was pretty deep and he figured I would probably sink!

After Daddy finished snow blowing and wiping off all the cars, he and Mommy went to Target to get a few supplies for the trip. I was sleeping so they left me with Grandma Smith. Now this may not sound like a big deal - but it is the first time in my life I have been alone with someone other than a nurse of my parents. Daddy showed Grandma how to use the suction machine just in case. My parents weren't gone too long and I never even woke up.

In the afternoon, my parents met Mommy's friend, Julz, her boyfriend Joe, her son Tyler and his girlfriend at Training Table for a late lunch. Julz and Joe had driven up from St George to meet me for the very first time. Mommy has known Julz for 13+ years - ever since they worked together at First Health. They didn't have a lot of time to talk but I know Mommy was happy that Julz got a chance to see me.

My parents and I had a final dinner at Grandma and Papa Smith's before there was one last stop at Grandma and Grandpa Mower's. I got to play with Traiton and Jackson. I even got to see Santa one last time - well a life size version of Santa that Grandma had. It would sing and dance and I thought it was great - as long as I kept my distance.

After lots of goodbyes it was back to the house and to bed. My parents spent some time getting the car packed up as I got to sleep. Mommy noticed that I was coughing quite a bit and as the night wore on it only got worse. Finally, my parents got me up and gave me a breathing treatment as this had all the signs of an upper respiratory infection like what got me hospitalized last month. My parents are praying they have caught it in time because we are hitting the road early in the morning.

Hard to believe, but I was the first of my cousins up this morning and I got right to work opening my stocking and checking out the present Santa had left me - a pink corn popper. It came in handy to wake the rest of the house up so we could start opening the rest of the presents. I got lots of fun gifts!

After all the excitment of opening presents it was time for a short nap and then on to Karen's for more opening of presents. It had really started snowing last night so by the time we got over to West Jordan there was lots of snow. In fact, Karen lost power last night and only had it restored a few hours before we arrived. We had a nice quiet lunch together and then Tiffany, Michael and there two boys came by and we opened presents together. Time for another nap - my parents had thought ahead and brought a play pen with them to set up for me but I wasn't having any of it. With the other kids to play with and so much going on, I was not willing to take a nap. After an hour my parents gave up and got me back in the car - this time to head over to Grandpa and Grandma Mower's for you guessed it - more presents to open! My cousin Traiton liked the alphabet train I got so much that he wanted it for himself and started to open the box right there. I told him I would be willing to share but he had another toy of his own to open. There were so many people in such a small space that I got overwhelmed and without an afternoon nap I was wiped out pretty quickly. Before long my parents loaded me into the car and we got back to the house for a quick bath and sleep. Merry Christmas everyone!

Aunt Kristin, Jackson and Uncle Lonnie Mommy and I woke up extra early this morning so Aunt Kristin could come pick us up. Mommy has been promising me I could meet Santa and today was the day! Uncle Lonnie and his parents brought Jackson and met us at Fashion Place Mall. We were there a few minutes to 8 so we could be first in line. Santa was right on time and I was very excited to see him but his elves were not so prompt. Santa came up to Mommy, Aunt Kristin and I and let us know that he would call to see what was keeping the elves. I was so happy to see him and signed "Santa Claus". Mommy and Aunt Kristin even taught him the sign so he would know what I was saying. 45 minutes later (yes, 45 minutes later) the elves had arrived and finally gotten everything set up and it was time for Jackson and I to sit on his lap. Now I was very happy to see Santa from afar and even up close as long as Mommy was holding me. In fact, when I couldn't see him I would even start to whine a little. So needless to say, Mommy was a little unprepared when I started sobbing as soon as she put me on his lap. In fact, I started to sign "sad" just to show how unhappy I was. Jackson was blissfully unaware of how scary an experience this really was - just wait until next year buddy!

After the excitement of Santa it was back to Grandma and Papa Smith's for a nap. Unfortunately, over the last few days the soy formula had kicked in and I was really constipated. Mommy had given me several doses of Miralax to help me feel better but it hadn't been helping. So it was time for the big guns - suppositories. That seemed to help a little and Mommy and Daddy felt pretty comfortable taking me out for a late lunch with them at Johanna's Kitchen. It is one of their favorite places and they were looking forward to the scones. Since they were going to close at 4 and it was about 2:30 it wasn't very busy. However, there was a long table full of a family sitting next to us. I was happy sitting in my high chair and looking around and about half way through lunch, suddenly Daddy looked at Mommy and said, "Oh no, the Miralax kicked in." Mommy rolled her eyes, "Whatever, quit kidding around." Daddy shook his head and said, "I'm not kidding." Sure enough, while they were eating I was pooping - all over myself and the high chair! Mommy and Daddy were laughing really hard and I was feeling so much better that I started laughing too. Mommy pulled out some wipes and got as much cleaned up as she could but this was going to require more than just a diaper change. While Daddy got the check, Mommy carefully took me into the restroom and changed my diaper and my clothes (thank goodness for a spare outfit she always carries in the diaper bag & those koala changing tables in restrooms these days). Once I was cleaned up and Daddy had paid Mommy broke the news to the waitress that there was a high chair that needed some deep cleaning. The look on her face was priceless! First lesson learned....don't underestimate the power of Miralax. Second lesson learned.... eat your scone first!

It was back to the house for a bath and a good nap. Then it was time for Christmas Eve dinner at Aunt Kristin and Uncle Lonnie's. There were so many people there and so many presents to open. It was a lot of fun and I got to spend time playing with my cousins. I even showed everyone how fast I am getting going up the stairs. We couldn't stay too late though because my parents said I had to get my bath and get to bed since Santa is coming tonight!

Wednesday, December 24, 2008

This morning was not so much fun for me. Although the soy solved the problem of wet stinky diapers it has created a whole new problem - constipation. Every 1/2 hour or so I would start crying and then have a tiny little stinky diaper. This went on for hours this morning - Mommy probably changed my diaper 10+ times without much relief for me. I got a dose of Miralax yesterday and one again today and my parents are keeping an eye on me for now.

Mid-morning, Daddy brought me and Mommy to Aunt Kristin's. Then, Lonnie drove me, Mommy and Aunt Kristin to my Mommy's work since it was snowing so badly. I got to see Wade and all the people in Mommy's office. Despite my tummy ache I was happy to show off my signs to everyone I met. Peter, one of Mommy's employees, had a cochlear implant and so he know sign language really well. He was signing with me much faster then I could keep up but I recognized some signs! Before long it was time for me to get a nap so we all headed back to Aunt Kristin's. I fell asleep in the car seat so Mommy decided just to leave me in it to finish out my nap.

Meanwhile, Mommy got to play with Jackson who was not in the mood to sleep. Aunt Kristin thinks his ear infection may have started brewing up again now that he is off the antibiotics. Mommy had him try out the feeding bag she brought him. First it was ice cubes which he seemed to like pretty well but then she moved on to sliced up apples which seemed to be a real hit! Later, Daddy came by to pick us up. While Aunt Kristin ran an errand, my parents took care of me and Jackson. (Maybe a little hint of what two kids would be like!) Daddy is a pro though, he gave Jackson a bottle and then carried him around until the fell asleep. He really has the touch! When Aunt Kristin came by she was happy to see Jackson finally asleep for good this time.

My parents and I headed back to Daddy's parents house and I had a little time to play before it was bedtime. My parents put me to bed a little early tonight because I have a date with Santa first thing to tell him what I want for Christmas. It is my last chance after all!

Shortly after going down for bed last night, my parents noticed that my trach mist machine wasn't working quite right. It was blowing air like it should and the heater was heating the water but the hot moist air never quite made it through the tubing up to my trach. After fussing with it all night, my parents realized the nebulizer jar that gets replaced once a week had stopped working. Luckily, Daddy had brought my nebulizer jar from last week when he had packed up the machine in the car. He had to go fish it out of the garbage and clean it up but it worked like a charm when my parents tested it this morning so we should be all set for tonight. Despite all the excitement, I had a good night's sleep and then I got up and played with Mommy and Grandma Smith this morning while Daddy was getting ready. Mid-afternoon my parents and I got bundled up against the snow and went to Cafe Rio for lunch. It is one of Mommy's favorite places and they don't have it in California. With the snow still coming down pretty good, we hopped on the freeway and headed down to Alpine to go to Cabela's. While Daddy shopped, Mommy and I took a tour of the dead animal exhibit. OK there is probably a better name for it but I am not sure what else to call it. They have lots of dead animals stuffed that you can get really close to. There were goats, bears, dear, antelope, moose and even two horses! It was pretty amazing and I got to practice lots of my signs since most of these animals I had never seen before except on TV.

After a late afternoon nap, my parents and I headed to Karen's for dinner. Karen had a Hallmark singing holiday centerpiece under the tree that she let me put on the highchair to keep me entertained while Karen, Kari and my parents ate dinner. Unfortunately, the batteries were on their way out and I didn't get a lot of time with it. But while I did I was fascinated. I espescially liked the doggie's ears that moved!

When we got home it was pretty late but because my parents forgot my trach change last night, they went ahead and changed it. I was definately ready for bed by then!

Monday, December 22, 2008

All in all, it was a pretty good first night in Salt Lake. I went to bed several hours after my normal bedtime and woke up about 2 am for an hour. I mostly just tossed and turned trying to get comfortable in a crib I wasn't used to. My oxygen saturations that caused my parents such stress the last time they were in Salt Lake were much better - probably because it was a gradual elevation change. I was in the 94-96 range most of the night and only dropped below 90 briefly a few times and then went right back up.

In the morning my parents got up and got me ready for the day and then it was time to meet up at Aunt Kristin and Uncle Lonnie's. We were caravaning to Ogden to have lunch with Mommy's cousins Rick and Lisa and their parents - Pat and Dick. Grandma and Grandpa Mower, Uncle Jason and cousin Traiton were going to meet us there. When we got to Aunt Kristin's I got to meet Lonnie's parents for the first time. They follow my blog from their home in Rogersville, TN. Lonnie's niece Randi & her friend Miller were also there for the holidays. We dropped them off at the mall on the way up north. I took a nap on the way up and then my parents were waking me up because we had arrived.

It was fun to see family I had never met before. I was a little grumpy due to the interrupted nap but eventually I warmed up and started showing off my signs to everyone. I also got to have some playtime with cousin Jackson. He has grown a lot since the last time I saw him and he is now bigger then me. He must have remembered when I swatted him all those months ago because he reached over and pulled my hair. Man is he strong! I know he didn't mean to hurt me and we'll be close friends!

After a few hours it was time to head home and I took another nap. Once again, the ride was over too soon and I was being woken up when we got to Grandma and Papa's. I got to see Aunt Ruschelle and my cousins Skyler and Dylan at dinner. I got to sit in the high chair next to Mommy and Daddy. I wasn't interested in eating but had a good time throwing everything off the side of the high chair. Later, Dylan was very sweet and played with me even though I am a lot littler then he is. I was getting awfully tired, though, and soon it was time for bed. I think my parents were pretty tired too.

After all the packing and planning, it was time to leave this morning for Salt Lake. Although it was still foggy in Elk Grove at 7:30 when we took off, by the time we got into Sacramento it was starting to clear up. The rest of the drive was sunny and beautiful! Donner's Pass was not a problem at all. It took about 12 hours total to get to Salt Lake and Mommy and Daddy tried to find ways to keep me entertained - you can see some of them above - travel AquaDoodle, a sucker, DVD's and naptime. I took two 90 minute naps on the trip and the rest of the time I played quietly in my car seat. My parents only stopped three times. The first time they gassed up while I was napping. When I woke up about 1/2 hour later they pulled over to a rest stop so I could get a diaper change. The last stop was for a late lunch in Elko. They ate at Arby's and my parents agreed it was the most dirty place they have ever eaten in. They couldn't wait to get out of there! Before they left Elko, though, Daddy wanted a coffee at Starbuck's. So while he waited in the car with me, Mommy hopped out to get it. Her life passed before her eyes when a girl driving too quickly on the wrong side of the road, talking on her cell phone and with three dogs running around the car almost creamed her. Someone was looking out for Mommy for sure!

By the time we rolled into Salt Lake I had had enough of the car and was kicking the back of Daddy's seat to show my displeasure. We got to Grandma and Papa Smith's about 6:30. My parents had a quick bite to eat while I was watching the three cats in complete fascination. I hadn't ever seen a cat in person so I thought they were pretty interesting. Mommy hadn't ever seen me sign "cat" before but I am making up for lost time now.

After being in the car that long, I wanted to burn off some energy even though it was past my bedtime. I spent the next several hours showing off my signing, scooting and walking to my grandparents. I even had a new trick for them my parents hadn't even seen before. I would put my head and legs on the ground and my butt up in the air like a triangle. Then I would take my hands off the ground and wave them around. Since I got such a great reception I kept on doing it until my parents made me go to bed.

It's so nice to be safe and sound in Salt Lake. Thanks to everyone who prayed and sent good thoughts are way!